These pin’s were made for walking.

Thursday – Day +09Woke up this morning, the usual broken sleep. I’ve only been here nearly four weeks, and only now thought to give up thinking about it – it’s just part and parcel of being away from your own bed surely, still only a few more sleeps to go.

So, I hopped up out of bed…

Wait. Yes, …I did! Suddenly gone was the half-horizontal bum swivel, slide and then lift up. The old muscle memory is showing, I just throw over the cover, raised my knee’s over the side of the bed and stood. I even had to go back and do that again, got myself in and covered, threw off it off again and just hopped up. Amazing!! …Quick someone throw a football at my feet now!!!

Ha, okay not quite. But immediately thought wow – of course that’s new (again). What else is possible, my leg positional awareness has returned. In front of the long mirror, I squatted down, it was neat and controlled, up again, down. JUMP!!! I did it!! I didn’t then wobble, or look unsteady. Albeit it was only 2-3 inches off the floor, but I couldn’t do that before!! …Right, Loo!!! …that’s what I actually got up for.

Wow, this really is happening, not wanting to get too ahead of myself, in nine days my body has rediscovered some muscles, the legs aren’t actually just for propping up on. They bend, they propel. I want to leave the thought’s there, but pipe dreams of light jogging and beyond are suddenly feeling well within my grasp.

Sadly just the night before as I was getting ready for bed in low light, I did catch my physical profile in the same mirror. Normally I face mirrors, straighten a t-shirt, new jeans, etc. But never my side. Well I was shocked, I think I welled up a little. In low light, almost black and white, saw what the MS had done to my body in eight years. I used to have a good body, I played sports, I had shape – I had a backside! Last night in my small underwear I saw something normally seen in history textbooks looking back at me. An almost perfectly straight line from the back of my ankles to the neck. If I wasn’t here in Moscow I think I would have despaired. My feeling this morning is now of increased hope and determination to bring it all back.

Regular as clockwork Dr Fedorenko knocks on the door with my morning blood test results. The how are you’s? Handshakes, big smile. I love this guy.

Congratulations!! You’re Leukocytes are now average, basically the same as anyone else. They are now 5.81 Million. (normal average 4-10)

Brilliant, I now have a fully loaded and in place immune system, and I’m told that I’m now allowed outside too! What an amazing start to the day, I have some legs awoken and now some outside air to digest. I’ll have to wear a mask still, even though I have the numbers, they’re still only likely to have the awareness or fighting ability of that of the Swiss Army.

Annoying I don’t get out just yet, still gotta get showered, a few phone call’s and various writings still to do. But the entire time, like a kid at the school window, I’m thinking about getting out! …this isn’t like me – I hate walking! It’s uncomfortable, unsteady and incredibly tiring – always to be avoided!

I download a walking tracking app to my phone, strap on my facemask, shoes, big jumper and head for the lift down. Walking out the door, it felt amazing, the air was cool – I’ve not breathed it for weeks, chilling the chords a little, it felt right.

I fire up the app and put one foot out in front of the other. Feet feeling floor – check. Calf muscles firing – check. Thighs, hmmm feeling heavy – but we’ll press on – check!

Balance feels good, my nerves are clearly now talking to my brain – no looking down, no guess work here, my legs are just placing themselves were I expect. Wait! I’m not looking down, I’m walking forward, I’m breathing the air in front of me – I’M NOT LOOKING DOWN!! I’m walking and I’m enjoying it. This isn’t cabin fever, this is a returning experience. I plod on.

Where to go, how far can I go? I’ve seen so many pictures of the beautiful grounds here and I’ve not gone to see them yet. I walk past one building, turn a right, another then I’m in the central courtyard. The main building, pristine yellow with grand columns, just like the pictures it’s quite beautiful, getting a sense of occasion here, I’m walking, I’m at a bit of an HSCT Mecca too. As I walk up a little closer, oop my legs are starting to tire, getting a little heavier now. How am doing on the app? 440 metres! Woah, that’s amazing! I’m sure I could manage something like that before, but would be getting really tired now and fed up! The added sensory difference is just taking away the chore. There are some lovely white benches surrounding the square, I’m not even interested in them. The words ‘Awww, Jen can I just have a sit down‘ are echoing around my head, but I’m pleased to say that I’m looking beyond, and I want to press on! I think the added sensory are now telling me ability levels too, rather than just ‘all out’ as they usual do.

Hey, isn’t there a chapel around here somewhere? I walk to the right of the grand building and I think I see it. Leg’s still giving me the okay. I walk past two gentlemen pointing lots of fingers at each other and their broken down Lada – Hmmm, nice jumpers. I enter the grounds of the lovely wooden structure, give it a bit of a go around and start thinking of heading back.

I don’t want to overdo it, I don’t know what I’m going to be like when I get back, ruining my evening for having spent all my energy. After all, it’s been quite a day – I’ve been jumping too. 😉

As I approach the door of the building, I clock in on the app. 880 metres!! …without stopping. No looking down as before, taking in the air, the surrounding. I’ve missed this, I really have.

I get back into my room, sit on the bed… Wow – ‘sit on the bed’. I didn’t collapse or fall as I certainly would have done before. My legs are even telling I could carry on a bit. Nope, nope, nope!!! …That’ll do for me!

I easily get up, fix myself a glass of Coke, place myself back down and take in the enjoyable warmth in my legs, not the acid-pain I would previously suffer. I put on some entertainment and settle.

That would be a lovely way to finish the story. But I’ve got far too many phone calls to make!! “Hello Jen…Listen to this”

Feeling so happy for you,we do live in a wonderful age where this is now possible.
For me i need to find out what the criteria is for being eligible for this treatment then it`s saving time for me.Do they accept folk with secondary ms?
You are a `Standing` achievement and a symbol for all.WELL DONE!!!

Absolutely Stephen!! I can’t stop smiling. Russia has no criteria, very much case by case basis, Dr Fedorenko will consider everyone. He also said I was close approaching SP myself. Thank you, I wanted to show how possible it all is if you don’t wait for the NHS sadly. 🙂

If you find time, please write a book. It seems to come very naturally to you. The relived experiences are detailed and promising to anyone who has suffered anything debilitating. Here is to the next day!! )

Awww thank you Cassandra, you’re certainly not the first person to say this – and I find it so surprising, I thought people were joking at first. I’m not even much of a reader myself. But I am seriously considering it now – thank you, and I’m so pleased you’re enjoying my musings! …Here’s to the next day indeed! 🙂

Love reading your blog – I have MS and am starting to seriously look at HSTC – Some people I know in my old hometown village of Claygate helped fundraise for you and I’m fascinated by your journey. When you’re back home I’d love to try and meet up. I have had MS for 10 years now and worry as my 47th birthday is approaching that I will get to be too old for this treatment – I have RRMS and can no longer run like I used to and fully understand how you used to dread walking! Will keep tuning into your blog – hope you keep improving and everything is brill!

Hey Anne. Thank you and I’m so pleased you’re enjoying my musings and progress. 😉 Brilliant, the people of Claygate and Holy Trinity Church have just been incredible and so supportive to me, I owe them so much. Yes, absolutely I hope to meet as many people as possible and talk about the positives of the treatment and help wherever possible. I’ve returned home now and would love to meet, where are you now based?

Hi Alex, I’m based in Wokingham nr Reading – so not too far! I founded the Claygate Scout & Guide Band originally as lived in Claygate and was married at Holy Trinity Church. My father was involved with the rebuilding works and vicarage alterations. I must admit I didn’t realize the long waiting lists for treatment. How long ago did you put your name down?

Not too far at all. We too were married at Holy Trinity, it’s a beautiful church! Sadly the waiting list is forever growing. Though Dr Fedorenko does see urgency in those that need it sooner, so don’t necessarily expect to be at the back of the queue. I applied in July last year and I believe mine was a cancellation slot.

Hey, thank you! I went to the A.A Maximov Hospital in Russia, led by Dr Fedorenko. There is an ever growing waiting list – so do apply quickly!! The treatment cost me $45K USD. …again, apply as soon as you can!!